Sunday's A.M Addition to my Newspaper All things Autoimmune, Chronic Pain and Dementia! And Suggestions?????

My Brand News Newspaper for Sunda AM is OUT and Here is the link:


http://news.autoimmunearthriticsystemiclife.com/#!headlines


This is MINE to Add, change, or whatever I feel my audience" wants to read, see, hear more about and so forth (as far as health issues go) PLEASE FEEL FREE TO MAKE SUGGESTIONS...if yu have another health issue, or would like to see more about something in health, let me know and I can go in and get more article and information about those topics as well as the ones I am giving you!

I am DOING THIS FOR YOU!!! "My "Audience) So, post, email ,speak up even post on the paper itself and give me your personal thoughts and issues!

A bit of catching up, been once again "ill" with "something" a Flare possiblly, but fever, severe body hurting all over, severe headache and NO energy!!!!!

Dropping in quickly to say I am still here! Been sick for two and a half days at least with yet again, fever, severe body pain all over, severe headache, and neck hurting, and my lower sides...plus NO energy...it was as if someone took a needle stuck it in e, and drained EVER BIT OF WHAT LITTLE BIT OF STAMINA I HAVE AND TOOK IT ALL AWAY! I could barely go from one room to the other at my house...so needless to say, I am BEHIND on painting, and everything. this house needs to be cleaned, including dogs bathed, and so forth... and I am way behind on getting the painting done... and I had been on a roll... not sure if it is just the heat that ha s zapped me, even though I have tried not to be in it a lot, or possibly just a continuing LUPUS and RA flare...


PLUS my ankles are "better" but that right one continues to swell if I get up and stand, walk on it a great deal, like painting, standing on the short ladder, or cleaning house... and I am sure the heat does not help it either... I felt as if someone had taken a ball bat to me and beat the hell out of me... honestly...So, I am headed to go and paint... and hope I can continue to "feel well enough" to get somewhat caught up o that, then tomorrow spend the day bathing the dogs, cleaning and and showering me! Anyway, keep my in your thoughts, and keep my kids in your thoughts and prayers...I know they have a an awesome trip to the river, for a week, but will be driving home I think tomorrow with their huge travel trailer in tow...so I wish them safety in getting home... 


This damned Lupus, RA, Sjogrnen's and the like all added up can really put a kink in your life, and you never know when it will hit you like a ton of bricks...

FIRST YOU AND DIRECT SUN! My Week has been NUTS!!!! Between bill pay day, the heat, errands, and trying to get the #2 house painted... I thought I would say hello...and tell you a couple of things.

Our "fortunate" temps BELOW that 3 digit mark are about over... the next 15 days or more show 100 plus degrees... so since it is just the 3rd of August, I can say I feel lucky, it could have been a month ago, BUT I HATE this kind of heat! My skin feels like hot burning coals are on it, just having my arm in this type of weather. Between the Lupus, and then the Prednisone, and other meds that effect my skin, I cannot take over a moment or two in direct sunlight.... again though we are fortunate :)




http://www.msn.com/en-us/weather/today/Ennis,TX,United-States/we-city-32.329,-96.624?iso=US

And SPEAKING OF SKIN, AND HOT SUNNY WEATHER - You Guys and gals out there with ANY OF THESE SKIN ISSUES, ILLNESSES, MEDICATIONS (Lots of meds can make you very vunerable to a burn within moments - many of your "tetracycline antibiotics", many of our blood pressure meds, and if you read your labels and look your meds up, they will give you a huge warning about sun!!!!!

So, be safe! I know I "try" to do anything outside, either before the sun arises, or after it is down below my tree lines, BUT today, I went over to house#2 and had to water some of the plants I've put out... and I could not avoid the sun TOTALLY... and it honestly felt as if my skin was on fire, just letting my arms be in and out within seconds!!! So, sunblock!!! and/or all ways you can protect yourself... my years of going out to the lake and tanning when my kids were little, or mowing my lawn in my bathing suit top and shorts, are long gone.....

 

Here is a partial list of the many medications and lots of information about medications, sun, and what you should do and NOT do!

http://www.medicinenet.com/sun-sensitive_drugs_photosensitivity_to_drugs/page3.htm

Donating Your Organs for Research, Burial or Cremation, Chronic Illness, how life has so many turns, & trying to cope with Lupus, RA, Chronic Illnesses, and living..,

I've had something on my mind, especially after going through what I watched my Mom go through, along with knowing my own health issues, my Grandparents health problems, and family backgrounds. Since I am already an "avid" advocate as far as Lupus, RA, and other Autoimmune Illnesses, as well as Arthritis and now Dementia's.... I've had something on my mind. For some, this may "gross" you out, but for me (and this is after a bit of thought), I feel like when my "time comes" I maybe able to make one more extremely beneficial act, that could help others in the future, even my own family down the line someday. I've been giving serious thought to "donating my tissue and/or organs" for research. Knowing the chronic diseases that I have, and that effect my own family, and seeing that "dementia's" tend to also run in my family, especially my Mom's side, I feel like that is a way, that I maybe able to help stop, find a cure, or give hope to the millions of others out there that suffer from these horrendous illnesses. This is a subject, that I am sure many people don't want to think about... but once you have had someone so close to you and you watch them go through some of these horrid illnesses, you have a deeper sense that you "need to do something" for your kids, Grandkids, and so forth on down the line, along with so many others that need to also find a reason why many of us suffer from them, along with how to "stop" these before they even happen, or "cure" them, put them into remission, or find some way to change what so far we still are fighting with. I also think after seeing the expense of a funeral, and fortunately my parents already had their things in order for that part of it, but the expense of a burial plot, and then the casket and so forth, I can see me doing a cremation, rather than going through the motions and expense of the things that go along with being buried. Now, I am NOT trying to gross anyone out, nor am I (hopefully) upsetting my own family with these thoughts... for they are just that.... 

things I've had time now to think about, and do some research on... and if I could help to make this world a better place in some way, then I feel I should do, just that. I also see that there is such a "guilt" at times, and a burden, even with funeral arrangements... I know that many go through thinking, well I cannot be "cheap" and not have a beautiful casket, or a huge amount of flowers, or have a very nice memorial service... yet when it comes down to it, the person, such as anyone close to you, does not care, more than likely if they are in a "pine" box, like used to be, or in a 10,000 casket, that is going to be in the ground, and certainly of no benefit to that body, for your soul is long gone, nor does it help the ones you leave behind. 

To me, leaving a "legacy" of being a decent, caring human being, that tried their best to love their family, take care of them, and know in your heart, you did everything you could to do the "right" thing, is much more important than a 750.00 flower casket arrangement, that shall wither and be gone within days. Anyway, I've not been here "online" much. And I will be in and out for awhile as their are things to be done... and things for me such as even my neck surgery, that I've put off now almost a year, that I do need to do... so as I make a list of the crucial issues, and line up what is important, and what is not so important, I will be here, some, and then be out and about getting other things done also. I have to get my eyes checked. 

My up close vision has gotten worse, plus I've not had that test due to me being on Plaquenil now in over 2 years, and I should be doing that yearly. So, that is one of the things that I need to do hopefully this week, and then of course the paperwork thing is almost a "hurry up" and then a waiting game. There honestly is no real "hurry" in any of it, other than how quickly myself and my kids want to work on it. Anyway, I may be away for again most of the week. I've got LOTS of painting to do, and getting those hardwood floors done... not sure yet exactly what I am going to do... I don't think completely redoing them is necessary... I think if I can get them cleaned properly, then apply the proper wax, and buff them, I maybe able to get by with that rather than go through the entire ordeal of "sanding, etc... on them..." 

but one day and one step at a time... with the weather in the process of getting HOT, lots of things will have to be done "around the heat"... thank goodness a good portion of things are on the inside, rather than the outside for now.... keep my family in your continued thoughts and prayers... we are all just in still kind of a shock, and somewhat of indecision on some things... yet it seems all of us tend to be on the same page... so that is a good thing... Rhia

Dementia, Alzheimer's, "A Quilt to Remember", getting back to somewhat of a normal, life, Advocacy work, & making a "Quilt Block" in Memory of my Mom & both Grandparents

Alzheimer's, Dementia, Quilt to Remember,Mom, my Grandparents, and for our generations to follow


YES! IT is 4:30AM and I am UP!

 I have not been able to sleep again in a couple of days. I am not sure if it is just being "down" during the day with my ankle, or feeling a bit "edgy" that I am NOT up and doing some of the things I need to be doing. Both pups have also been restless, especially tonight. In fact the little one my Peanut Holy Terrier, :) was a bit sick to his tummy. But, that pup will EAT ANYTHING! I have to constantly keep a watch on him...because if he can get his paws on it, it's going in his mouth, and more than likely he will eat it. I hope it is a "puppy thing" for I know my Tazzy did that when she was little. But after she turned about a year old, she got out of that picking it any and everything in her mouth. Plus he CHEWS on everything! My other two did, some, also when they were in their first 6 to 9 months, but after that, they began to ONLY CHEW on what they were supposed to. I hope Peanut does the same. But he is definitely, "a pup of a different color" for sure...LOL! Stubborn as a Mule, yet he is coming out of that a little now. He also thinks my hands are "chew toys"...so we have really been working on NOT "chewing, nipping" at Mom's hands and on Bub's ears... They seem to get along good, but there are times since Bub's is older, he gets enough, so he puts Peanut "in his place"... he never hurts him, he just gives him this "look", and Peanut KNOWS to BACK OFF playing for now... :)

They both like me to sign to them, and I did finally get Peanut a "song" I made up, plus he already is getting a couple of nicknames, I catch myself calling him "Pea-knuckle" (spelling like the game Pinochle" - or LOL something I bit "off" color, since he was neutered, I call him "Peanut-less" at times.... LMAO! Well, believe me ALL of them have had several names and always learned that by either that name, OR my TONE or BOTH, either things were good, or they had done something "not so good".... just like kids, these fur-babies, seem although at times to continue to be fur-toddler's most of their lives... They have really been "trooper" though.

Through all of this with my Mom, I had to be in and out so much here at the house with them, and that was something they have not been used to, I know there were days they both could not wait for me to "cling" the keys and open the doors and both standing, jumping, barking, and crying for joy that "Mom is finally HOME"! So, it has been a difficult time for them, a totally weird schedule, and not our "normal routine", although I tried to give us "our time" each evening together... and then I know they have sensed me being upset, in a turmoil, and also both of them especially Bub's knows when I am not well myself, and it is almost like he "watches" over me, sitting beside me, and even at times he will be there, and he will just let out this kind of almost a "cry" wanting me to "sit down" with them, and be still for a little while. So, having me "home" the last couple of days to themselves more or less, and spending time down with my ankles, they have been in heaven right beside me.


Okay... now to another reason for this POST, I want to do a "quilt piece" for the "Quilt to Remember" tour that is going around the nation in honor of those who have had these horrid diseases of Dementia, and have taken away their minds, in so many different ways, time frames, and so forth. I had been an advocate already in many ways for the Alzheimer's Association but I had forgotten about the quilt. So, when I wan in getting information on where to donate in honor of a loved one etc, or in memory of someone, I saw that website about the quilt.

Since both of my maternal Grandparents had some form of Alzheimer's and Dementia, and now my Mom, I want to do a quilt piece to go with this quilt around the country. I've submitted my "story" and asked for instructions about the quilt block, which for an individual is 4 feet by 4 feet.

Since my Grandmother made MANY quilts completely BY HAND, not one machine stitch in them, and I have also been able to do a quilt, and have actually a oversized, probably King sized almost top finished for a quilt, I decided what better way to "give back" and also hope to help to find the reasons for these horrid, mind taking diseases, and give hope that we find reasons, find more help, have more research, find a cure, or find out what we can do to completely STOP some of these types of dementia's. I am enclosing the "link" here for this project. I have several ideas already and really already have materials etc, (some I found over at Mom's, and I think it is still good enough to use in the quilt) and am waiting to hear back on details about the quilt block and getting it to them -

http://www.alzquilt.org/

Here are a few example of blocks made by people for the "Quilt to Remember"

Created by Colleen Anderson,
Fargo, ND,
in honor of her mother, Patricia Kelso

 Created by Phyllis Bednarek,
Woodridge, IL,
in memory of her mother, Mary Estelle Ruppert 

 

Created by Bernadette Discon,
Jackson, NJ,
in memory of her husband, James Russell Discon

Created by Kimberly Fondaw,
Grand Rivers, KY,
in memory of her mother, Geraldine M. Brown 

ALL of these are from the website about the quilt! Plus there are many, many more that give me some wonderful ideas for doing one in memory of my Mom. 

To that Pearly White City.....

Again I want to come in and thank everyone for their love, prayers and support during such a very difficult time in our lives. Dad passed away 11 years ago, which seems almost impossible. In fact, it fell this year that March 27th, was Easter Sunday again, which was when he passed away. By the Lord's grace, He allowed me to take care of Mom, and be there to watch her leave this world, and pass onto where she was met with open arms by everyone who went before her. I had not told it here yet, but on that fateful Thursday morning, I went in to give Mom her "comfort" medications supplied by Hospice, as I did every few hours, and during that morning dose, I "knew" it was time. I had said that I would "know" somehow, someway, it would come to me, and it did. She seemed almost a bit more at peace in some way, yet, I could also tell she was almost "trying" to tell me. So, after giving her the medications, as I always did each morning early, I walked outside, around in the yard, just thinking, praying, and finding my own "way" also to make it through another day, and pray all I did helped her. When I came back in, I sat down beside her on her left side, and took her tiny frail hand in mine.

She never moved, and most of the time, even when giving her medications she would make a bit of noise or move a bit, so, all I knew to do, is what came to my heart. I began to sing a bit of several hymns that she loved to hear Dad sing. Of course "Pearly White City" was one that Dad always sang, and it was always requested that he sing many, many times at church, at other funerals and such, so that last chorus I began to sing of Pearly White City, this sense of calmness seemed to fill the room, and the tears flowed down my cheeks, and as I finished the last few words, Mom literally took maybe 2 breaths, and then just stopped. I sat there holding her hand, talking to her, and knowing, her pain, her confusion, and all she had endured was now gone. We are "selfish" as humans, and of course I did not want Mom to "leave", yet I could feel her within my own heart, and I knew no matter what her body was no longer able to do, she will always be with me, everywhere I go. I told others that it is almost like when I finished that song, it was Dad telling her to "come home". I want to thank everyone once again, and Joy it is so good to hear from you and your family. I truly would love to get to see all of you, it has been so very long.


Uncle Macon and Aunt Cleo were always my favorite Aunt and Uncle, and it was always a blessing to be able for them and sometimes your, your family and Mike to come also. Craig, thank you also. We have known one another since we were very young, and I appreciate your thoughts and prayers. Ron, I appreciate your prayers and condolences also, and it is funny it seems like just yesterday we were all working at EBF, or would be seeing each other in town, and although I've been back now for almost 11 years, I don't see many people, as much as I would like to. Thank you Jim and Frances, and thank you for the beautiful plant. I LOVE plants, so it will fit in very well with my collection for sure. I have to again give a huge thanks to Keever's, everyone helped me out and as always were so compassionate and caring. I thank Father John for giving the funeral service, and for all of the family and friends that stopped by on Sunday and Monday. All of you truly made this situation "easier" on our family.

We love all of you, and what a blessing it was to have my daughter Amanda and my Son In Law, Jimbo, and my two Grandsons here, plus having my son Jason with me, we even under not such great circumstances were able to have "quality time" together, and that is something we over the years have not nearly had enough of. I want to thank Family First Hospice for all of their support and comfort, for Mom and for me, as well as Physician's Choice Home Health Care, who were there to help me and Mom out for a few weeks before things had to go into "Hospice" care. I again are am so thankful and blessed. As one day, rolls into another, and as my heart is full with love, and as my mind and body try to "heal" long story, but of course I got sick, and was sick, mainly my Lupus acting up, but then I slipped on wet grass Sunday morning, and sprained BOTH ankles, the right one severely, so I am trying to take it easy for the next couple of days and allow my body to try and mend. -


Pearly White City Hymn Lyrics

There’s a holy and beautiful city
Whose builder and ruler is God;
John saw it descending from Heaven,
When Patmos, in exile, he trod;
Its high, massive wall is of jasper,
The city itself is pure gold;
And when my frail tent here is folded,
Mine eyes shall its glory behold.

Refrain

In that bright city, pearly white city,
I have a mansion, a harp, and a crown;
Now I am watching, waiting, and longing,
For the white city that’s soon coming down.

No sin is allowed in that city
And nothing defiling or mean;
No pain and no sickness can enter,
No crepe on the doorknob is seen;
Earth’s sorrows and cares are forgotten,
No tempter is there to annoy;
No parting words ever are spoken,
There’s nothing to hurt or destroy.

Refrain

No heartaches are known in that city,
No tears ever moisten the eyes;
There’s no disappointment in Heaven,
No envy and strife in the sky;
The saints are all sanctified wholly,
They live in sweet harmony there;
My heart is now set on that city,
And some day its blessings I’ll share.

Refrain

My loved ones are gathering yonder,
My friends too are passing away,
And soon I shall join their bright number,
And dwell in eternity’s day;
They’re safe now in glory with Jesus,
Their trials and battles are past.
They overcame sin and the tempter,
They’ve reached that fair city at last.

Refrain

Mom's Favorite Song

Candle In The Wind (Elton John - for Princess Dianna Tribute)

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed itself
Where lives were torn apart
You called out to our country
And you whispered to those in pain
Now you belong to heaven
And the stars spell out your name

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Loveliness we've lost
These empty days without your smile
This torch we'll always carry
For our nation's golden child
Even though we try
The truth brings us to tears
All our words cannot express
The joy you've brought us through the years

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed yourself
Where lives were torn apart

Goodbye England's rose
From the country lost
Without your soul who missed the wings of your compassion
More than you will ever know

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Your footsteps will always fall here
Along England's greenest hills

Your candle burned out long before your legend ever will

"Dare To Dream" Sponored by Cure Click and About "Dreaming" and Clnical Trials

http://projectdreamnow.org/

If you are a research volunteer, share your story! Tell others what it was like.

If you don't know, but you're curious, check out the stories of real people like you, helping advance science.

Project D.R.E.A.M. Dedicated to Research Education and Awareness Movement

---

 

Mom and Sharing a bit more.....

I was not sure about posting this here but it seems like the very best spot to let those who want to know about my Mom, Henrietta Steele. Of course this is Pam Steele, from the Class of 78, gosh a long time ago, LOL.... and many knew my Dad Minnis, that worked for Ennis Business Forms for 45 years, started at 16, and walked from Byrd/Rankin back and forth until he finally got his Dad's car (Model A) I think... anyway, back then it was still Ennis Tag. My Mom was having signs of "dementia" for a bit, but she is to be 81 in August, so "memory issues" are a part of that anyway. Yet, just this past January, she was still able to do much of her "daily stuff", cooking, cleaning, still in that little tiny house on Anthony Dr. - where I was raised, etc. 

But, within weeks, things went from "okay" to wait a minute something is very wrong. She was not able to "recall" how to put her car in drive, not able to turn on her oven, could not recall how to use the Microwave, and from there she quickly was stricken with what I feel is "Lewey Bodies" Dementia, it moves extremely fast, and her symptoms to be are definitely what I would say "fits".... both my Grandparents Rosie and Joe Svehlak, her parents, had Alzhemeir's/Dementia. So, it is not a huge shock, BUT theirs did not take them down this quickly. Which there could be some "mini TIA's" happening, mini strokes, and we would really not know that for the most part. 

Anyway, rather than drag this out, I know some of you have become "friends" on Facebook with me, and I am of course a friend on our Class of 78 Facebook page, so I also enjoy keeping up with everyone plus remembering "Ennis" and things we had and did as kids here, that are now just memories. Anyone, that may know of someone who would have known Dad and Mom, or myself, as I said I felt this maybe this best way to "inform" the few people we know and most of our relatives have already passed away.I am in Ennis and have been back almost 11 years from Seattle. I know a few did not even realize that. I will of course have something posted on the Keever's website once we reach that place, etc. But, mainly I wanted to get the word out, because this happened so quickly, and we don't have much family etc left, so I felt this would help to get the word out to those who wanted to know..... Pam Ravishing Rhiannon Steele

 

 

The last pic of the 3 of us in 2004, before my Dad passed away...

 

UPDATES THANK YOU'S AND EXPLANATION AS TO WHAT IS HAPPENING IN THIS NECK OF THE WOODS...

Congrats to My AWESOME GRAND DAUGHTER!!!!!! Heather I am so INCREDIBLY PROUD OF YOU :):) As you move forward in your life may nothing stand in your way, of you following ALL of your Hopes and Dreams! You are truly a Treasure and I could not ask for a better Granddaughter, and those two wonderful brothers of yours ;) Have fun, be safe, and live your life as if you are on top of the mountain! Nana Pam

 

 

Just a quick "Hello" and thanks all. Today is such a mixed day mentally, physically and emotionally.. I SO wanted to be at my GRANDDAUGTHER'S GRADUATION TONIGHT NEAR CORPUS, but alas with Mom as she is, and the WEATHER making life hellacious for everyone just about, I had to postpone my trip. Then I hate to whine, but MY BACK, LEGS, BUTT AND HIPS ARE ON FIRE!!!! after I got Mom in from the hospital night before last... dumb move on my part, but stubborn I guess shows me I should ask for help... at the moment I did not have one clue who to ask... but she is resting well. The aide came and got her all cleaned up, and I gave her all of her "comfort" medications, got things done there, and I just had to come to "home" for a bit, for the puppies, for me, and I need to get off my feet at least for a while.... love to all... and I am totally more than exhausted... so if I don't post, or accidentally don't answer the phone etc... I am just totally out of any "brain wave" at the moment.... 

Before it slips my mind, A HUGE CONRATS!!! to my incredible granddaughter today!!!! HEATHER YOU ARE SUCH A WONDERFUL YOUNG WOMAN, AND AS YOU STEP OUT INTO THE WORLD OF COLLEGE AND BEYOND, MAY YOU FIND ALL OF YOUR DREAMS COMING TRUE... I SO WISHED I WAS ABLE TO COME, BUT OF COURSE BETWEEN GRANNY STEELE, AND NOW THE WEATHER SO HORRIBLE, I HAVE TO POSTPONE, BUT MY HEART AND SOUL WILL BE WITH YOU THIS EVENING!!!! Love to you... and love to your brothers, Logan, and James... and also to your Mom, Amanda Batson- Matheny and Dad Jimbo! 

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"

CNN Stigmatizses Chronic Pain Patients in National Pain Report by Paul Gileno

FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!

Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.

Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.

It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.

I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!

So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!







http://nationalpainreport.com/opinion-cnn-stigmatizes-pain-patients-8830432.html

Another Week of Horror, severe pain, trying to BE A CARETAKER TO MOM, when I NEED a CARETAKER RIGHT NOW ALMOST MYSELF, LIFE, AND what it decides to pitch at us!

Once again things are not well with my Mom nor Myself. I found her in the floor again yesterday around noon time. I actually think she may have not "fallen" but more just slipped out of that rocker and down onto the floor from the way things looked.... anyway, I FINALLY by getting her to sit up for awhile, and her medications, and then getting her feet under her and her walker "steady" I got her up and into the chair... the lady that is over the PT portion of the Home Health came over and of course I had to tell her about this.... and as I told her, Mom got up, walked with her walker after she was there, she was able to talk fine, she had no bruises, she did NOT hit her head, and I saw no difference from her the day before... she seems to be "fine" one moment, and the next she has no clue where she is or who I am... 
so none of that changed. 

So, after that woman left, I gave her the rest of her regular medications, some Ensure, something to drink and tried to get her to eat, and she of course did not want to eat again. And besides all that she stopped up the damned toliet (I have no clue what she is doing) but she did not tell me until yesterday and claimed it had been that way for a couple of days... well in among the woman being there, me trying to answer questions, trying to plunge the toliet, I finally went and got some MR. Plumber gel, poured it in, tried again, and I got it partially unstopped... but I left it and told Mom NOT to use it at all, to let it sit overnight and use the potty chair by the bed... and today, it may go ahead and unstop...

I have a "small snake" that can go down into the toliet and I know it is not very far, because the sinks work fine, I used the washer etc... and only the toliet seems to be the issue... I may have to call a plumber but I know how much they charge... last time mine was stopped up but down below my "clean out" in the yard, I poured bleach in it for days, and it was tree roots that slowly can "seep" into the pipes and fill them... so little did I know I almost had it unclogged...so when he got there, he basically ran a bit of the hand auger through there, and hell it took him 2 minutes and cost me over 100.00!!! So, that is why unless I just can't get it today, I do not want to call a plumber, especially on a weekend.... So, I was totally exhausted, hurting badly, my own lower spine is worse, and my neck, shoulders, arms and hands throb, burn and hurt so badly, I can barely stand to sit here and type... dammit the hell I am sick of this crap... but I get a call about the time I pulled up to my home from Mom's and it was the "lady" I 'thought" had been at the house earlier... and she was "concerned" that Mom falling out of the chair "worsened" her condition... and as I told her, in the first place both myself, my son feel and the woman that was there, that she really did not take a "hard fall" - it was more she just slipped out of that chair... that I have been TRYING TO GET RID of anyway... she cannot get in and out of it, it rocks and glides... and she needs to not sit it in anymore... 

plus I threw out an old magazine table, that is so wobbly and old, she tried to "push" herself up on it, and I know also is an issue... in fact I threw it outside yesterday and told her it was NOT coming back into the house... anyway, this woman almost acted as if I was "not doing the right thing" with Mom... well maybe I am wrong, but I have been doing everything, and 

if I remotely thought she was hurt, or in any way had hit her head, or was "worse" from this "fall" I would have called the ambulance and took her out to be checked out... but she was NOT injured, not even a bruise and in fact once she was up off the floor, got up and walked around, and so forth, she told the woman she felt "okay" and that was no "pain" at all other than her regular "back pain" that has been there for many months now.,. so I took "offense" to this woman, not knowing what took place, what I see every day of my life, what I know goes on etc... acting as if I am being "cruel" or something... honestly home health care is a "joke"... other than the "aid" helping Mom by showering, washing her hair, and changing her sheets a couple of times a week, the other 2 really do "nothing".... so I am not thrilled... I thought the entire purpose was for them to spend up to 35 hours a week with her, and be there to take some of this off my back, where I don't have to be over there 3 or 4 times every day... it is taking a toll on me badly, especially this past week... I am physically in horrible pain myself now, and when I am complaining, then it is really, really HORRIBLE pain! 

SO, I have a QUESTION? DOES ANYONE KNOW MORE ABOUT "NON TERMINAL HOSPICE" or more of A PERSON THAT COMES IN AND DOES MORE THINGS SUCH AS STAYING THERE A CERTAIN AMOUNT OF HOURS A DAY? I am "wading" through the insurance to see what is covered, and what she "qualifies" for... but I MYSELF NEED A CARETAKER, AND I NO LONGER HAVE ONE, and me trying to be almost a "FULL TIME CARETAKER FOR HER AND MYSELF, IS TAKING ITS TOLL ON ME"... so if anyone knows someone here in Ennis that does that type of thing whether just "personally" or through a company would you let me know?

The Latest Addition of my Saturday Newspaper All Things from Chronic Pain to AAI illnesses, Lupus, and so much more.... great stories today!

Latest Saturday Addition of My Newspaper "Life with Chronic Pain and AAASD's"'' LOTS of great articles from Arthritis, to AI illnesses, including Lupus Awareness Month coming up, Chronic Pain Patients speaking out about the medications they need for a quality of life and even so much more! Check it out, please forward it, and sign up to get the updates daily!  Thanks to all of you, Rhia Steele "All things Autoimmune"​



http://paper.li/ravishingrhia/1438808814?edition_id=1522ce40-0766-11e6-8e8c-0cc47a0d15fd

Update of My Daily Newspaper - and also an "Update" on just how Insane" a disease like Dementia /Alzheimer's Truly is.....

http://paper.li/ravishingrhia/1438808814#!headlines

It really DOES for the most part have many articles and information relating to our AI, RA,FM,Chronic Pain, Lupus and so forth, because am able to "pick and choose" what types of information is printed in it daily. So, I have chosen the specifics of what I know many here are dealing with. 


Now I have added "Dementia/Alzheimer's" to the "pot" of things that bring in articles. Never would I have ever in my life thought that about 9 months ago, my own Mom would go from doing her own grocery shopping, driving to church, doing her own house work, cooking, and I just helped with other things... to NOW... she at times does NOT even know WHO I AM, nor that she is in "our home". She cannot go and fix much to eat, I have to make sure she eats, drinks and takes her medications properly. She cannot shower or bathe herself, she cannot clean her house... and she has not driven her car in over 2 months maybe longer, nor been to church... she cannot "operate" her oven, stove, washer or dryer, and honestly the phone (regular home phone) she at times does not know how to use it... she stays in bed more than not, and the list just goes on and on and on... of what in such a short amount of time, not just "mentally" but physically incapacitated these illnesses can be... 

I am of the belief she has a "certain" type that unlike many, starts gradually... and for a couple of years there were "signs" but to go down hill so quickly. It is a "fast type" of dementia called Creutzfeldt-Jakob Disease .... honestly I hope and PRAY I AM WRONG, because usually it comes quickly, and they pass away pretty soon for the most part, and I am wanting my Mom to go with me like we did just about 4 MONTHS ago to the Casino overnight!!!! She "cut up" her players cards and said she would never be able to again... plus she went from no cane and no walker, to a cane, and within weeks to a walker... and we have to watch her, she now has problems with balance and is a huge fall risk... she has not clue how to pay a bill, she does not even go outside, check the mail, or anything, but due to her falling right now it is best she does not go out... she has several steps down in the front to go down... 

I am totally exhausted, worn out, drained, and in almost a "state of shock"r" for the lack of a better term right now, mentally, physically and emotionally now... I have to go over every day and really should be there more, but I have of course my own home, my pups, and me to take care of also.... WE NEVER KNOW!

Brand New Clinical Trials Sponored by Cure Click One New for Rheumatoid Arthritis and Osteoarthritis, Cushings, CLL,COPD, Pediatric Asthma, Diabetes Trial Search, Alzheimer's & More coming soon!

I want to give out the great news to all of you who suffer from RA and Osteoarthritis! There are two new Clinical trial Studies, for each of these horrid illnesses.

The Information is below, and will also be on my pages of my blog around where all of the other great clinical trials are. Actually several new ones have been added just in the past week or so, including  Chronic Lymphocytic Leukemia (CLL) including a new video link below, Pediatric Asthma, Diabetes Universal Clinical Trial Search, and still there are ones for COPD, Cushings Syndrome, and Alzheimer's Mild to Moderate.

There are also upcoming new Clinical Trials very soon on other very important illnesses that plague our nation, and the world..

So, below are some links that you can go to, and find out more about whether the clinical trial is in your area, if you qualify, and also spread the word to others who maybe interested in some of these. Many people find they are better, some even "cured" by certain clinical trials, and most cost the patient nothing, and in fact many also compensate the patient for their time, their gas money and so forth. So, please take a look or pass these onto others you may be thinking would benefit!

http://curec.lk/1hKk5XN

http://curec.lk/1YGQWfK

http://curec.lk/1rfgZAJ

http://curec.lk/1QkoLgA

http://curec.lk/1VK9axV

http://curec.lk/23JLHmp

http://curec.lk/1SfAHn2 

#cushingsdisease #cushingssyndrome    #patientpower, #arthritis,  #RheumatoidArthritis, #arthritis365, #Rheum, #osteoarthritis, #asthma,#CLL

Saturday's New Addition of my Newspaper "Life with Chronic Pain and AI Diseases" - Great info in here this morning!

http://paper.li/ravishingrhia/1438808814#!headlines

MORE CRAZINESS INVOLVING the CDC and them NOT WANTING DOCTORS TO ASK A PATIENT ABOUT THEIR PAIN LEVELS AS FAR AS A 5TH VITAL SIGN!!!! JUST PURE INSANITY!

Please read and sign the petition below to President Obama and how you feel about this Opioid bull!!!!


http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336?xid=nl_mpt_DHE_2016-04-14&eun=g773630d0r



This is titiled "TO STOP DOCTORS FORM ASKING ABOUT"A FIFTH ISSUE WHEN YOU GO TO YOUR PHYSICIAN, AND THAT IS ASKING ABOUT YOUR PAIN, AND PAIN LEVEL!"

http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336

Talk about another load of CRAP!!!! If a patient comes in with anything that a physician KNOWS causes pain, why would they NOT ask the patient what their pain level was, had been and what is "tolerable?" I am SO SICK of the CC, the government, Congress and all of these "opioid fearful people causing havoc for us Chronic Pain patients who like myself when I go to my Rheumatologist Friday, HE SHOULD want To KNOW my PAIN, then, the past few months and what is TOLERABLE? How do we or HE know if my MEDICATIONS ARE WORKING? If he does NOT ask the Questions about pain, the inflammation, and so forth he would NOT know... this is simply ridiculous!

This is purely incidious! How can a doctor NOT ask a patient who comes to see them especially with any illness, whether chronic or acute what their "level of pain is" as a "vital sign"? In the first place, if you leg is broken, or you are having heart problems such as a heart attack that in itself can cause PAIN!

 

Then take Pain Doctors who see chronically ill pain patients, or like above my Rheumatologist who bases a portion of their "diagnosis" updates on how a patient's pain level is, whether worse, better, the same, and so forth... I swear with each day, and each article I want to fly to Georgia and tell the CDC, along with being in Congress, my story, then ask them, HOW LONG THEY WOULD GO WITHOUT ANY PAIN MEDICATIONS IF THEIR SITUATION WAS LIKE MYSELF AND MANY OTHERS? If they have a loved one that is in severe pain from a spinal injury, or chronic severe disease, or has Lupus, RA, and even osteoarthritis, as my Mom can testify lately, causes her SO MUCH PAIN, without a pain pill, SHE LITERALLY CANNOT GET OUT OF BED AT ALL, PERIOD! I felt she may "pass away" on Monday, because I got there and she was in so much pain, AND APPEARED TO BE SO ILL, I FELT SHE WOULD NOT MAKE IT ANOTHER DAY!

I GAVE HER, her pain medication properly, her other medications for her blood pressure and so forth, and made sure she had some beside her with direction on when to take them, and by TUESDAY, she was UP AND OUT OF THE BED! Yesterday, she was up and able to do a "few things" rather than be CONFINED TO A BED! So, I want the CDC TO EXPLAIN WHY I WOULD ALLOW MY MOM TO SUFFER NEEDLESSLY TO THE POINT SHE WAS CONFINED TO HER BED, WHICH WOULD ONLY CAUSE MORE HEALTH PROBLEMS, AND POSSIBLY SEND HER TO THE HOSPITAL, RATHER THAN MAKE SURE SHE TAKES HER PROPER PAIN MEDICATION????? I am SICK TO MY STOMACH, AT THIS CRAP OVER ABUSERS, AND USERS... WHO FOR THE MOST PART BY THE MEDICATIONS VIA THE BLACK MARKET, OR FROM OVERSEAS, AND NOT FROM A REPUTABLE PHYSICIAN! 

THOSE THAT SELL HEROIN, ALSO HAVE THEIR HANDS ON EVERY TYPE OF MEDICATIONS, WHETHER THEY BE OPIOIDS, AND DOWN THE LINE... AND THEY CERTAINLY ARE NOT GETTING THEM FROM A REAL PHYSICIAN... THEY ARE GETTING THEM THROUGH SOURCES AND SELLING THEM ILLEGALLY TO THOSE WHO CHOOSE TO ABUSE!!!!!! 

I want to SCREAM OUT to these fools that THE MAJORITY OF US ARE NOT ABUSERS! We are people that NEED TO BE OUT OF THE BED AND LIVING OUR LIVES LIKE MY MOM! AND, our medications do NOT REMOVE ALL OF THE PAIN... but MAKE IT TOLERABLE ENOUGH TO GO ON for the most part. I STILL LIKE THIS WEEK, HAVE MY DAYS THAT THE WEATHER, WHAT I HAVE TO DO THAT WEEK, from TAKING OUT THE TRASH TO THE CURB, TO SOMETIMES JUST HAVING TO RUN TOO MANY PLACES FOR ERRANDS FOR MY MOM AND I... AND IT WILL PUT ME DOWN FOR A DAY OR TWO, OR THREE... BUT I CAN TELL YOU I would be DEAD, and in ASHES, if I HAD TO LIVE EVERYDAY IN THE SEVERITY OF PAIN with NO medications! There is NO WAY MY BODY could WITHSTAND THAT SERIOUS AMOUNT OF INTRACTABLE PAIN!!! Pain EFFECTS YOUR HEART, AND OTHER REALMS OF THE BODY, and my BODY WOULD GIVE WAY, AND I PROBABLY WOULD HAVE A 3RD HEART ATTACK IF I HAD TO LIVE IN SEVERE CHRONIC PAIN EVERY DAY!!!! SO PEOPLE GET A GRIP AND LEARN THE TRUE FACTS OF THE STORY... WE KEEP HEARING "ONE SIDE" AND NOT THE OTHER......

 

 

 

 

 

 

Good News on the Homefront for a New Generic (Biosimilar) Inflectra for RA, Crohn's, and more....

Brand New Generic Inflectra FDA Approved for the Use in Several Diseases Including RA, Arthritis of The Spine, Crohn's disease, Psoriasis and more....





http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm494227.htm

What A NIGHTMARE FOR CHRONIC PAIN PATIENTS, FAMILIES, CARETAKERS... THE CDC, TRYING TO GET CONGRESS INVOLVED & Just how Insane all of this is!

HAVE ANY of YOU that are in CHRONIC PAIN or are interested in CHRONIC PAIN ISSUES due to being a caretaker, or having a loved one that deals with CHRONIC PAIN SEEN THIS????!!! Talk about ONE GARBLED BUNCH OF bureaucratic RED TAPE GIBBERISH, THAT BY THE WAY THE CDC IF YOU DO NOT ALREADY KNOW IS getting CONGRESS in on all of this, and CONGRESS could PASS LAWS OR BILLS that MAY INHIBIT OUR PHYSICIANS and how they treat PATIENTS!!!! The GOVERNMENT SHOULD HAVE NO SAY in how our physicians treat patients with ANYTHING!!!

I was just blown away by this... I have read all of the other things going on but when I FOUND THIS, it made me so upset and so mad, I am definitely going to write to my Congressmen and Women and let them know exactly how I feel about this. I am watching MY OWN Pain Doctor who has been seeing me for almost 9 T+YEARS and has NEVER hesitated to do what was necessary to keep my chronic pain level as low as we could so I could function in a daily world, take care of my home, my MOM, and have some "quality of life". Yet NOW I have noticed SUDDENLY he seems HESITANT or like he is upping my "pain pump" meds very slowly after me having the pump since 2010!!! He replaced it on Dec 29th, 2015 after it had a motor stall, and he has yet to get my medication level back up to where it was.



NOW, I WILL SAY my pain seems to be a "bit better" since I have been on the Minocycline for the RA/Lupus. It has been about 3 or 4 months and since we are doing the pump meds slower in upping the doses, I have noticed it could be I may not need to have the pump set as high as it had been which is awesome! BUT, I also am concerned deeply about his "manner" about it all now. Suddenly, since this CDC mess started even he seems like he is being even more overly cautious about the medications and how much I need.

Now, he is very willing to up it more even next week, if I am still not at a comfortable enough level, so I can say he is not giving me any issues such as that, but it is just what he says, or more "what he is NOT saying" that really has me concerned. So, I wanted to post this, and I will put it up on my blog, and my other Facebook pages, and I am going to try and have this as an article on my newspaper (which by the way, will be "linked in" with my blog soon)... but I just almost fell out of my chair when I began to try and wade through this ridiculous mess, and see what the CDC is doing... and they are "lumping" people together... for instance, if someone had been on a prescription pain medication THEN went to something such as heroin, rather than say that MANY of them get those "prescriptions medications" off the streets NOT FROM DOCTORS!


So, it makes it sound like MANY more get scripts and then go to heroin from their physicians and that is just wrong! If they got down to the line of whom gets "illegal prescriptions off the streets" then decides to go to heroin, due to it being cheaper etc... those people should NOT be COUNTED into those who go to illegal drugs after taking prescriptions from doctors. So, their "numbers" are "skewed" as to those types of facts. So, just coming up and saying "so many thousands" go to illegal drugs after opioids that are "legal" is not correct.

And are they taking into consideration the number of those who are in "chronic severe unrelenting pain" who cannot get help from doctors, that decide to commit suicide? I have had over the years several people ask me directly, How do you live and try and have a life with that much chronic daily pain? Then They add" I believe" I may just jump off a bridge, or kill myself before I could live my life like that!?" ALL of us NEED to write our Congressional Leaders, get our physicians involved, get our family members, friends, those who have chronic pain, and know they would not have a life or a quality of life without the proper medications.

I DO NOT believe in "quacks" that just hand out medications of any type just to get people into their offices for money! Those that do that to rip off Medicare, Medicaid, Insurance Companies and "their patients" should be removed from being a physician. I also do not believe that some "so-called" pain management clinics are "truly" what they say they are. When I walk in to a physicians office, that is "supposed" to be a Pain Clinic, and everywhere you see a sign stating "We do not prescribe pain medications" to me that is a red flag warning that something is wrong!


Then DO NOT call your "clinic" a "pain management clinic" if you are not offering ALL TYPES of pain management, whether it be, alternative things, therapy, acupuncture, and other types of pain management items, injections and so forth... but that should be NOT considered "pain management".


There definitely needs to be a "different name" for those who ONLY OFFER "alternative" ways of pain control. It is misleading to patients, and unfair to us that think we are going to someone who can help us with pain, whether medications of any kind are involved or not, if the first thing you see is that you do NOT prescribe pain medications. It could be that "opioids" may not be needed, and there are certainly other types of medications, such as muscle relaxers, meds for certain types of nerve pain, NSAIDS for those who can take them, Migraine medications etc... so the "host" of pain control medications are NOT ALL "narcotics"..... This is a HUGE PROBLEM that needs to be resolved. And I know there are people who "abuse" the system. They are NOT legitimate patients and they get medications for other reasons other than for real chronic pain. BUT, the THOUSANDS OF US who are TRUE PAIN PATIENTS should NOT BE PUNISHED due to those who "choose to abuse"...


Rhia - PLEASE Do your own research and take time to write, call, email your Congressional people, the CDC, and spread the word through your own Social Media Networks!

Here is the link to this bunch of garbled mess from the CDC!


http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm



These photo's of my legs, and the abscesses are just more of a small "portion" of suffering from the pain, and all of the other complications from Lupus, RA, Sjogren's and so forth... We "NEVER FOUND OUT" exactly why all of these appeared on me... but it took over 2 YEARS for it to all clear up.... They just told me after I went through every test and specialist that it was the Lupus... and then the cellulitis below that turned into abscesses on both of the tops of my thighs tool=k over 6 MONTHS to finally "heal" and now I have two huge terrible looking scars from them... and talk about pain... I had to go for 8 weeks once a week to a "Wound Care Specialist" in Dallas, that debrided those every week, in other words "cut out all of the dead materials and put special material in them that was a "collagen" to help "fill in" and heal those very deep wounds... at first they were about 3 inches deep and at least 2 to 3 inches wide...

Below are the wounds from the cellulitis that both turned into abscesses.... and in between me seeing them, I had to clean these myself, pull the packing out and redress them daily... I was on 2 different antibiotics for 6 months at least... and the still look horrible... I love spring and summer, but I dread having to have people "see" what they look like now.... 

YOU TOO Can be a Virtual Advocate during the AF Summit on the Hill 2016!!!! YOU ARE IMPORTANT!!!!!

Arthritis Foundation Summit Begins Monday in DC! YOU TOO can be a "Virtual Advocate"!!!!

http://www.arthritis.org/about-us/news-and-updates/arthritis-foundations-advocacy-summit-fights-for-awareness-and-cure.php

Advocate 101: Join the Movement

What is an Advocate?

Advocates help improve the lives of people living with arthritis. The key to success in changing government policies and funding is through grassroots advocacy and our advocates are the Arthritis Foundation's chief resource for making positive changes in Washington. Click here to join the movement!

What does an Advocate do?

Advocates make their opinions and personal stories known. By signing up, you'll receive Action Alerts in your inbox when important arthritis-related issues are debated on Capitol Hill.   In 5 minutes or less, you'll be able to write your elected officials and tell them their constituents care about arthritis and how it impacts our communities....(see the URL for more information...   

http://www.arthritis.org/advocate/advocate-101/

Sponors for the 2016 AF Summit!